Wednesday, November 24, 2010

One of Those Days

"For we know that the whole creation groans and suffers the pains of childbirth together until now... even we ourselves groan within ourselves..." Romans 8:22, 23.

Several people in my life are going through tremendous difficulties right now and I am just so sad for them.

Some days I am shocked and saddened at the sufferings of this world.

~Today is one of those days. ~

I'm in a lot of pain. I'm not sleeping. My white count is back up, my body is freaking out. Doctors are playing ping pong with me.

Some days I just want "out" of my body.

~Today is one of those days.~

"For I consider that the sufferings of this present life are not worthy to be compared with the glory that is to be revealed to us... And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose." Romans 8:18, 28

I know in my head that God is working for the best.

Some days I just don't feel it, though.

~Today is one of those days. ~

I'm clinging to hope.

"For in hope we have been saved, but hope that is seen is not hope; for why does one also hope for what he sees? But if we hope for what we do not see, with perseverance we wait eagerly for it." Romans 8:24-25.

Hannah ;)

Tuesday, November 23, 2010

New Plan: Avoid the Rheumatologist!

Still reminding myself of what I said at the end of my last post... clinging to Christ and following HIS plan, not mine! I'm really tired, shaky, light headed, and hurting. I am feeling pretty awful, but I know He is good! ;)

My doctor's appointment yesterday was not so great. I am going to have to stop seeing Rheumy! Every time I do, she wants to send me to the ER! Don't worry; I said no. ;) I was super shaky when I was in her office and she was rather concerned about that. I tried to explain that this just happens sometimes and we don't know why and going to the hospital doesn't do any good, but she did not really get it, unfortunately. No, it isn't right, and it stinks that I have to live feeling like this, but they haven't found anything that helps when I feel this way!

I do appreciate that she takes my concerns so seriously. She told me that I know my body, and so if I know that something is "off" right now, we need to deal with it. Unfortunately, we're sorta at a loss for what's wrong and how to deal with it. The most obvious likely culprit is that the abscesses are flaring up, so she drew labs to check on that. If my labs come back looking bad, they will either add in another antibiotic (and it's one that makes me sick, sadly) or put in a PICC line and do more IV antibiotics. Not excited about either of those options, so hopefully the labs look okay!

So... Rheumy and I agreed that if I didn't go to the hospital that I had to touch base with the endocrine doctor, since the shaky/dizzy/sweaty thing seems to be endocrine related. So I called her today... it was quite unhelpful. Her response was basically, "You're fine. You've been shaky before. It's not an endocrine problem." I knew that she would say that, and I know it's not her fault... but it's frustrating enough to feel real crummy. It's even more frustrating when each doctor either points their finger at another specialist to say that it's their problem or won't address the problem since they don't think it's in their specialty.

The good thing from the appointment is that Rheumy gave me the green light for taking the anti inflammatories that help so much with my joints. She's always been super hesitant and frowned on any use of them for me, based on my history of UC. I guess now she figures I'm so messed up that NSAIDs can't really do much more damage, haha. ;)

I was reading one of my (many) favorite Psalms, Psalm 37. I was just reminded that I do not need to worry or fret, but instead I need to trust in the Lord! He is in control, and me getting worked up about things I cannot change is wrong! "Delight yourself in the Lord, and He will give you the desires of your heart. Commit your way to the Lord; trust in Him... Do not fret -- it leads only to evil." I also LOVE verses 23-24 "The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His hand." David, who wrote this Psalm, doesn't deny that we may face trouble. The Lord may allow us to struggle and even and stumble. But it is God who holds us up and supports us so that we never fall.

Hannah ;)

Sunday, November 21, 2010

Bunnies and Surpassing Value

My shirt today about sums it up...

This was my FAVORITE (if mildly obnoxious/borderline inappropriate) shirt to wear anytime I was in the hospital during my battle with Twitchy's pouchitis. Twitchy was was both literally and figuratively a continuous pain in the rear. In case you were wondering, the shirt was a gift... I'll letcha guess who gave it to me... Anyways, my doctors seemed to always get a kick out of it. They'd come in, ask how I was feeling, and I'd tell them, "Read my shirt!" ;)

Today I'm frustrated and sad... this weekend I've been really uncomfortable. ;(
***GROSS ALERT - you may wish to skip the next paragraph.***

Remember how I've had TWO major surgeries to make it so I wouldn't poop blood? Well... that continues to be a fail. ;) I feel like I have to have a bowel movement - or rather, an accident - every few minutes. You see, one of the abscesses has formed a fistula (connection) with what's left of my rectum and with other stuff down there, so nothing can heal up. The result is that I continuously have the feeling that I have to go to the bathroom as the abscess continues to drain. It's uncomfortable and annoying and gross. Dr. Sidekick called me this week, and we talked about it... unfortunately, there's really nothing that they can/want to do about this until they are sure that the infection from the abscesses is totally gone. Then, we will wait a few months and see if the connections close off on their own. If not, then we'd consider surgery to fix this. So it's gonna be a while before this goes away, and it will probably involve more unpleasant procedures.

In other news, we've officially decided that I will do the rest of my surgery follow ups with Dr. Sidekick instead of Dr. A. Dr. A has a sort of relaxed, hands-off, "let's see how you do on your own without any intervention" approach that I initially appreciated very much. But it hasn't really worked out well for me, since my body is so "different" and responds so unexpectedly to things. Between his philosophy and my body's wackiness, we haven't had very good chemistry. It just seems like he repeatedly has not taken my concerns seriously until things got very out of hand. I feel strangely guilty about making this small change, but I know it's the right decision for me to be a good steward of my body.

I'm also continuing to have adrenal issues and my pain is pretty bad. I just feel so yucky and tired and out of it. Tomorrow I am going to see the rheumatologist. It's good that I'm seeing someone. I feel like I'm starting to crash again, so I think our best plan is nipping this in the bud somehow before I really crash. I don't know how the nipping should take place... but maybe she will know! She is really good at coordinating all my doctors, so I'm hoping she can call the appropriate ones and they can come up with some sort of plan together. She also knows that I am frustrated with falling through the cracks with doctors. I was supposed to see her again this week, but her next available appointment was in the middle of January. A few days after I made that appointment, her nurse called and said Rheumy didn't want me to have to wait that long, so she's squeezing me in tomorrow. I appreciate that quite a bit! Hopefully she will have some brilliant ideas for how to fix me, or at least get me feeling a little bit better again! ;)

So, overall, I'm a little bit sad today. I'm getting a little nostalgic thinking about this time last year, when I was so hopeful about the future and about getting healthy. If there's one thing I've learned this year, it's that my hope simply cannot rest in this life or this body! If my hope were in those things, you should feel very sorry for me, because honestly, this body I have is not that great!

But this life is not an end unto itself. It is merely a means to know Christ. In Philippians 3, Paul says that he counted all things to be loss in view of the surpassing value of three things: knowing Christ Jesus, gaining Christ Jesus, and being found in Christ Jesus. How does that happen? God calls us to devalue everything this life has to offer. Jesus said that everyone who wishes to follow Him must deny himself and take up his cross - an instrument of death! That's scary. As you think about your own life, if God asked, would you really willingly to give up -- live contentedly without -- all the things you have? Possessions, luxuries, abilities, dreams, family, health, job, your life itself? Paul lost everything for Christ - his job, his respectability, his freedom, and eventually, his life. He wanted to know Christ in the fellowship of his sufferings, being conformed to His death. That's not a pretty picture. But it is so worth it to know, to be found in, and to gain Christ. And if we can only know Christ by losing our grip on things we have or want in this life, that loss is so insignificant in light of what we gain. How could I really want something God doesn't want me to have? Isn't He worth so much more? Although I would rather not be hurting and sick, I pray He continues to chip away at me and my desires until His will becomes what I want!

Hannah ;)

Friday, November 19, 2010

It's Friday!

Whew! Made it! ;)

It's Friday night, and it's been a long week! I was in SO MUCH pain all week... the chiropractor helped some for a little while, which was great, but my body has just been freaking out because I'm hurting - like heart racing, shaking, sweating, seeing spots. Not fun. My joints are hurting a lot and I'm having that weird all-over pain - I dunno if it's muscle pain or what, but it's unpleasant. My tummy has started dumping off and on again, too.

In happy news... the stomach pain from this weekend is much, much better. I have the pain on occasion, but it goes away after a little while. My nausea is, like, almost gone!! Today I didn't even take my nausea meds because I just didn't need them!! WOW! I have been eating a lot better (almost normally!!) and my weight is going back up, which is great!

I think that this week has been so bad because of the missed steroid dose... I know that sounds silly, but it really messes with my body! I took (shh... don't tell my endocrine doctor) an extra dose of 'roids today, which helped some. I'm frustrated because my body was doing SO WELL and not having adrenal issues until this week. Oh well...

Hannah ;)

Tuesday, November 16, 2010

25 Days

Well, it had been almost month since I had been in the hospital. I missed being there so much that I had to go back! Not really, but I did end up in the ER this weekend... oops.

On Friday, I went to the Infectious Disease doctor. He asked me to "tell my story, beginning with my diagnosis." I gave him the Reader's Digest version, but it was still a LONG story! Poor guy! Basically, the plan is to continue on antibiotics for a few more weeks while monitoring labs to ensure that everything is continuing in the right direction. He hopes I can get through these abscesses without doing more CT scans - I like that idea! He did more labs, and they all looked great!

Unfortunately, on Friday night I started having stomach pain. I think I had an obstruction. It continued on through Saturday afternoon, then improved as things started moving again. Then... it came back again. I was at my dear friend Heidi's (check out her excellent blog here) and realized I was going to need some medical attention. Elizabeth very kindly followed me to the local ER and sat with me til my mommy came. The ER doctor wasn't the sharpest scalpel in the OR, so to speak, but we both knew I just needed some pain relief and hydration, not a full work up. He did some labs, and my white count had jumped back up a bit. Nothing terribly high, but higher than it had been the day before. After some pain meds and fluids, I started feeling very drugged but much better, so I went home. I spent Sunday in the fetal position with my heating pad, bottle of pain pills, stuffed puppy from the Links, and fuzzy blanket from Melinda!

I had to work on Monday and today, which was interesting, but I started to feel better by Monday afternoon.

Monday was made even more interesting by a little surprise experiment to see how I would do if I skipped my 11 am dose of steroids. I forgot to bring that pill (one of three daily doses) to work. I did okay, just was a little tired and dizzy. I think the missed dose had a delayed effect, as this afternoon at work, I had a full blown adrenal episode, complete with shaking, sweating, dizziness and very clouded thinking. Bummer. Thankfully, it only lasted an hour, but it was extremely tough to work through and I remember how bad this stuff stinks! ;)

Tonight I'm having incredibly bad muscle and joint pain. My joints have been flaring up (and the new thing is that my entire rib cage hurts - not just my sternum), but this is even more than that. When the adrenal stuff gets worse, my pain goes way out of control. All this from one missed dose!! Hopefully it settles down soon. This makes me VERY nervous about the steroid tapering I'm supposed to to soon.

My GI doctor called me last night. He's concerned about scar tissue and adhesions in my intestines as well as in my urinary system. I continue to have pain and troubles with urination, which is concerning to him. Hopefully it's nothing serious and I'm hoping it's just nerves healing from surgery. He said, "I really hope we do not have to do more surgery on you." I told him I sure hope not; I don't ever want surgery again! My body seems to really hate surgery, and he agrees that I've had an incredibly rough time. If the abdominal pain I had this weekend returns, he wants me to text him (no kidding... who texts their doctor, though? Oh my life...) and he will set up some tests that need to be run. Instead of CT scans, we will do abdominal ultrasounds in the future.

I'm a little concerned that I am having problems again. I really hope that the abdominal pain was just some freak episode that won't ever return. I hope that the adrenal stuff and the severe pain I'm having tonight are related to the missed pill and will resolve. Tomorrow I'm going to see the chiropractor, so hopefully he can help with the pain... I know that God is in control of my life and this situation, so I'm not worried, but of course I hope that I will feel better again soon! And I'm thankful for my 25 hospital-free days!

Hannah ;)

Thursday, November 11, 2010

It is Well!

Well, another week is nearly gone! I've been super busy, so I haven't been on the computer much. Sorry! ;) I took another physics test... all I have left is the final, then I'm DONE WITH MY COLLEGE DEGREE! I will hopefully take the final just after Thanksgiving. It is so amazing to be able to focus and study and stuff. My brain is working much better these days. I am so thankful.

This week has been okay. It's been harder. My arthritis is definitely flaring, so my joints are really stiff and achey and I am very tired. I've been a little more nauseated. But I still made it through work! It's amazing. It's hard, but God is allowing me to keep going. In good news, my abscess pain is much improved. I had labs done on Tuesday (and there's a really good story that goes along with this lab draw, but that's for another post)... and guess what? My white count is NORMAL!!! This is an excellent sign - means the antibiotics are working and I'm beating the abscesses! Praise God.

On Sunday, I barely made it to church. It was one of those mornings where I just couldn't get moving (side note: pretty every morning was like this all spring and summer! So no complaints!). I finally was able to limp to the tub and soak for a while and that loosened up my joints enough for me to make it to church! As I sat there, the pastor asked us to open up our Bibles, and he read "my" hope passage - Romans 5:1-11. Talk about full circle... I thought of all those long nights of pain in the hospital when I'd quote those verses over and over again in my head. I thought of all of you who have memorized with me.

"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." The word "perseverance" is the same word "endurance," used in James 1, one of my other favorite passages. It says, "Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing." Our trials produce endurance, which completes us and equips us with greater faith, like I Peter 1 says - "You are distressed by various trials, so that the proof of your faith, being more precious than gold, which is perishable, even thought tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ."

Romans 5 continues, "And hope does NOT disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Nothing we can do will change God's love for us, because nothing we did made God love us in the first place! What a blessing to know that God's love for us will NEVER change, since he loved us when we were helplessly lost. And what joy to read these verses along with so many brothers and sisters who've prayed for me and memorized with me... SO COOL!

Then, later that morning, we sang the hymn, "It is well with my soul." The lyrics say, "Whatever my lot/ Thou hast taught me to say/ It is well, it is well with my soul." How incredibly true that is... What God asks me to face each day is irrelevant in light of what He has already done for me: "That Christ has regarded my helpless estate/ and has shed His own blood for my soul."

Hannah ;)

Sunday, November 7, 2010

More Drs... But Good Ones ;)

So... I love the name suggestions for my abscesses... keep them coming... so far I like the "Ab Four" the best, although it's hard for me to choose! ;) The abscesses are still there... the pain is better, but I'm bleeding and stuff and I'm worried they will eventually have to do some surgery to fix all that, but I don't have to cross that bridge til after Christmas! Hopefully the ID Dr will have some good ideas when I see him on Friday.

I saw Dr. Pain on Thursday. Actually, I saw his resident, Skinny Dude, but Dr. Pain still came in and gave me a big hug. They were all super happy that I'm doing well enough to be working again, and I sometimes even feel like myself again! Although I'm still in pain, it is so much better, so I'm taking less and less of the narcotic pain meds. ;) Yay!

I am having a lot of muscle pain, so we're tweaking meds to make it better. Last time, Dr. Pain started me on anti-inflammatories, which have been AMAZING for my joints. I know the GI guys really want me to NOT take NSAIDSs, but this one is supposed to be safer on the GI system. And they make a huge difference in my ability to function. To minimize any long term side effects, Skinny Dude suggested that I try doing 5 days on, 2 days off. I skipped a day, and my joints are letting me know about it - I am SO STIFF and achey now. I feel like I have the flu and I haven't been able to straighten my knees since Friday. Boo. I think that the joints are flaring up from the weather anyways (and... I wore heels at a wedding on Friday), and skipping didn't help. He told me to see if I could tolerate not taking it... maybe my answer is no... but I will try again next week!

We also talked about the gastroparesis and narcotics issue. My nausea has improved quite a bit with the antibiotics and anti fungals, leading me to think that the problem was bacterial/fungal overgrowth, not gastroparesis. But anyways, I asked about it. Skinny Dude thought that since things are going better with the nausea and I'm doing well from a pain perspective that it wasn't necessary to make any changes. I'm taking a reasonable amount of pain meds and the nausea isn't affecting me nearly as much anymore. So, basically, I can keep taking the meds as needed because it seems like the nausea issue is getting better.

Overall, my pain is under waaaaaay better control most of the time and I am living without thinking too much about it. This is the most wonderful thing imaginable. It has been so unbelievably bad and so unbearable for such a long time. It is the most amazing relief to NOT be in horrible pain all the time. So I raved to the Pain Drs a little bit and they beamed with joy. They are the only doctors I actually get excited to go see. Any day you walk out of a doctor's office with prescriptions for anti-inflammatories, muscle relaxants, and sleeping medicine is a good day in my book. ;)

Then, I saw Endocrine Dr. I hadn't seen her since July... so I had to fill in a lot of gaps for her! So much has happened since then! I was worried she'd make me taper down again on steroids. Obviously I want to get off them, but I finally am doing well and feeling okay, so I'm super hesitant to make any changes! Don't want to rock the boat! She agreed that we should not make any changes until the abscesses are gone and my white count is normalized. Then, we will cut back a tiny bit on one of the three doses. I will alternate, taking the smaller dose one day, and my normal dose the next day. After a few weeks, if all goes well, I can take the smaller dose every day. Long term... she indicated that she does not think that I will be able to get off steroids entirely. That was disappointing to hear. But she would like to try to get me down to half the dosage I'm at right now. This is a very long term sort of thing. It will take years to see where my body will settle out. I don't really care... I'm just happy to NOT be having adrenal issues right now! When my adrenal stuff is acting up, my pain is so much worse, my GI tract stops absorbing, I get so dehydrated and sick and shaky and literally can't move. If I have to take steroids forever to prevent that, so be it!

Right now, I still feel okay - sometimes I even feel good! I'm still nauseated and hurting, but it's at a level where I can handle it. I had issues with blockages three times this week, which is a big bummer, since that problem had gone away for a while after surgery. But they haven't been too painful, and they always pass on their own after a few hours. BUT - I am functional almost all the time. It is so incredible to be able to shower and get dressed and not have to rest for an hour or two afterwards. It's amazing to be able to do multiple things in one day - like run errands AND go hang out with friends. Sometimes I just feel like a normal person and don't have to think about how I'm feeling!! I'm eating really well. This is incredible. I am so thankful for all these huge blessings! I cannot take them for granted.

I am a little frustrated with keeping track of all the pills I have to take - I'm on 11 different meds, most of which I have to take three times a day - but they are all WORKING to keep my body up and running and comfortable, so it's really a small price to pay to be functional!

Hannah ;)

Wednesday, November 3, 2010

A Dilemma

Today I had my appointment with Dr Sidekick (in surgery). So... over this weekend, I started having all my "abscess symptoms" again. It started to really hurt when I would pee... then Monday night, my stomach started to hurt really bad again. It hurt all day Tuesday and was awful this morning - like considering leaving work and checking myself into the ER awful. Thankfully, it started feeling much better, but I figured it was a good thing I was going to see the surgery people today!

It was kind of a sad appointment. To quote, I am in a "bad and complex situation" with my abscesses. Since my white count is still elevated, and especially since I am feeling bad again, I have to continue on antibiotics. The abscesses are still there, we guess. I got to see my scans today (Side Note: It is always mildly disconcerting and uncomfortable for your doctor to show you your insides. "See that right there? Those are your ovaries!"). The abscesses aren't really big enough and they are too deep in my body for them to be able to do anything to them (drain them or something), but my immune system is having a very tough time cleaning them up, apparently. It seems this is going to take a really long time and a ton of antibiotics to resolve... And antibiotics may or may not do the trick. Therein lies the dilemma.

We discussed re-scanning to see if the abscesses are growing or shrinking or what, but I REALLY want to avoid more scans because a). I don't really want cancer from all these CT scans, b). I don't really want to have the contrast dye again because I'm now allergic to it! and c) I don't want to mess up my poor body by taking all the steroids that would be necessary to keep my body from reacting to the dye. We talked about other scanning options and treatment options. We could do an MRI, but it's not as helpful for a number of reasons. If I continue to get worse, we may have to consider IV antibiotics or even surgery, but we really don't want to pursue ANY of those right now. ;)

So, I ended up with a referral to Infectious Disease. They are the best people to decide what antibiotics I should take, and how long I should take them. And they may have new ideas for treating the abscesses. In the meantime, I am supposed to go to the hospital if anything gets worse. Booooooo. Let's pray nothing gets worse!!

I'm still doing pretty well! My stomach has been killing me for the past few days, and I had some adrenal issues on Sunday, but really, overall, I feel so much better that I can't complain! I have energy and stamina like I haven't had since... just after surgery #1! I'm eating really well, which is so incredible! I am feeling more and more comfortable around food and feeling hungry most days! I still have nausea, but it is well controlled when I take my medicine.

Dr Sidekick may think I'm in a bit of a pickle, but really, my dilemma is... should I name my abscesses? I've named everything else so far... Honestly, though, it's always weird to go to the doctor and hear that there is no timeline or schedule or anything for if/when things will get better. I appreciate Dr Sidekick's humility to admit that they don't know how long the abscesses will take to go away, or that they don't know if my body will be able to beat them on its own. He also commented that, for whatever reason, my body just doesn't follow the rules. No one wants to hear that kind of stuff. That's why it's so reassuring and comforting to know that God knows me, inside and out. He knit me together. And I can totally trust in Him to do what's best in His perfect time.

Hannah ;)